Hi all. New member but long time lurker here. I'm desperate for some advice, so I came out of hiding and finally registered. 

Has anyone experienced severe side effects from Spironolactone? I honestly feel like it's killing me. Within one month of starting it I began experiencing neuropathy-like symptoms in my feet. Then I developed debilitating pain along my clavicles, in my shoulders, and in my neck (moving up into my head and jaw). It's like a mix of traditional, achey muscle pain and SUPER SHARP, stabbing, electric pain that screams "NERVE ISSUES!" I'm also really tired most of the time and feel kind of depressed, although that could just be from the pain.

I don't understand what's going on. Is this hormonal? Is it due to nutritional effects? I know Spiro can deplete folate. And of course there's the potential potassium issue, but I just got my level checked recently and I'm fine.

I did a bit of poking around on the Internet and found other people talking about how Spiro caused really bizarre side effects that, of course, the doctors insisted were totally unrelated. One woman said her terrible symptoms took an entire year to clear up.

What's really confusing to me is the conflicting information on how Spiro really affects hormone levels. Some sources say that it raises estrogen (and potentially lowers progesterone). Others say it can lower estrogen; one website said it straight-up has anti-estrogenic effects. Who's right?    I feel lost.

Does anyone have any advice for me? I stopped the Spiro almost a month ago now, but still feel terrible. Maybe a bit better, but still... Pretty awful. The pain can just get brutal.

Lack of water could be the culprit. Have you talked to a doctor about this?

Hi, I've been on Spiro for 15 months but am not experiencing those symptoms. I agree either KAT, what is your water intake like?

PS Cola, coffee, booze etc doesn't equal water...

I used spiro for 7.5 months (plus oral E). My side effects:

- Diarrhea and Irritated bowels
- Constant weight loss to the point of underweight BMI.

But not a lot more apart than that. Things sort of improved on cyproterone acetate.

Were you taking any estrogen while on Spiro? Lack of sex hormones could bring on these symptoms as well, perhaps.

My water intake is very good. I have to pee constantly!  I also don't drink any soda or alcohol. Just water, milk, and occasionally grape juice with no added sugar.

I haven't been taking any estrogen. 

I did see someone on this forum (I think) talking about how they got debilitating spinal pain from Spiro, but that it got better with estrogen.

You might want to get your potassium levels checked... sounds like classic hyperkalemia symptoms. Cut back on milk, it's actually really high in potassium.

I experiences something similar for 2-3 days because I didn't really adjust my diet at all after starting HRT and it turns out a lot of my favorite foods are big in potassium.

No milk. No bananas. No sweet potatoes. No tomato juices / sauces. No citrus juices.


Also you probably want to start Estrogen. It's definitely not healthy to be more than a few months without a sex hormone in your system.

Quote from: PopGeek on October 02, 2014, 07:49:29 AM
My water intake is very good. I have to pee constantly!  I also don't drink any soda or alcohol. Just water, milk, and occasionally grape juice with no added sugar.

I haven't been taking any estrogen. 

Well, there might your culprit! These might be menopausal symptoms due to not enough estrogen in the absence of androgen.

My potassium level when I started Spiro was 3.9, which is on the low side. These symptoms started within a month of taking Spiro, and I had my levels tested shortly thereafter. They were a 4.5, which is pretty ideal.

I think hyperkalemia usually presents with nausea and weakness...? Low potassium is usually when you get muscle pain and cramping, I thought. There's some overlap with the symptoms though, which makes it confusing.

I stopped the Spiro about 3.5 weeks ago now, so my body should be excreting potassium normally...I think? I stopped cold turkey too. God, I know, that's the wrong thing to do, but I was in so much pain and no one was helping me. I'm in-between doctors right now too, since I just moved. My doctor was supposed to give me a recommendation, but he's dragging his feet as usual.

I've got a friend who just started Spiro a few weeks ago, although just for acne. She's already seeing results, but unfortunately I think I've scared her socks off with my personal situation! I was sharing some info I'd found during my research, since she knew I was on it, and she's concerned about what it'll do to her now. I think she's worried about her estrogen since her levels were low-normal. Her dermatologist apparently knows basically nothing about the drug – he just prescribes it. Seems like most doctors are like that nowadays. 

I've been trying to help her out since I'm already constantly looking for research papers/accounts of peoples' experiences, but even I'm confused about the effects this drug can have.

I wish I had never gone on it.    My doctor made it out to be this super safe drug with only mild, temporary side effects.

perhaps increase your sodium intake....and see if you get better

Spiro is a shotgun blast to the endocrine system and does much more than lower androgens. It screws up the mineralcorticoid balance and raises cortisol. There are several studies and a lot of anecdotal evidence that shows most trans women do not need an anti-androgen if you are taking an adequate level of E. If you want more info on this, PM me.

I only drink soda and nothing like that is happening to me, but then I'm at a low dose so that might be it.

Quote from: JessicaH on October 02, 2014, 08:34:19 PM
Spiro ...and raises cortisol.

quiet the contrary honey, spire inhibits the production of cortisol

just sayin !

Spiro or maybe it's estradiol have my bones aching. Why I'm going to just hurry and get castrated. I'm not with taken all these pills

Quote from: Julia (Apple-Whatever) on October 02, 2014, 05:32:57 AM
I used spiro for 7.5 months (plus oral E). My side effects:

- Diarrhea and Irritated bowels
- Constant weight loss to the point of underweight BMI.

But not a lot more apart than that. Things sort of improved on cyproterone acetate.

So you take "cyproterone acetate" and spiro ?

Quote from: TinaVane on October 03, 2014, 01:00:57 AM
So you take "cyproterone acetate" and spiro ?

No. On January 2014 my endo switched me from spiro to Androcur. I'd rather get an orchi and lower the quality of future SRS than taking spiro again. The only other option I have is flutamide, but since it is more toxic than cypro...

Quote from: peky on October 02, 2014, 09:00:03 PM
quiet the contrary honey, spire inhibits the production of cortisol

just sayin !

"The spurious elevation of plasma cortisol levels as determined by the Mattingly method in patients treated with spironolactone has been well established.2,3 Awareness of this complication will prevent unnecessary investigation of abnormally elevated plasma cortisol. Wood et al3". http://jama.jamanetwork.com/article.aspx?articleid=348312

Quote from: Julia (Apple-Whatever) on October 03, 2014, 01:37:57 AM
The only other option I have is flutamide, but since it is more toxic than cypro...

No, bicalutamide, safer than flutamide. Ask your doctor about it. You'll see...Quite safe. 

Quote from: JessicaH on October 03, 2014, 08:51:57 AM
"The spurious elevation of plasma cortisol levels as determined by the Mattingly method in patients treated with spironolactone has been well established.2,3 Awareness of this complication will prevent unnecessary investigation of abnormally elevated plasma cortisol. Wood et al3". http://jama.jamanetwork.com/article.aspx?articleid=348312

but this was noted in only one patient. Is this a common side-effect? Never heard of this before...

Quote from: KayXo on October 03, 2014, 11:10:05 AM
No, bicalutamide, safer than flutamide. Ask your doctor about it. You'll see...Quite safe. 

Last reply or I will end stealing the thread... Options are fairly limited with the social security endo. Spiro / Cypro / flutamide (this last one was prescribed by the old endo but not by the current one), and oral estradiol or patches.  For further questions about this, please, in a PM

Quote from: JessicaH on October 03, 2014, 08:51:57 AM
"The spurious elevation of plasma cortisol levels as determined by the Mattingly method in patients treated with spironolactone has been well established.2,3 Awareness of this complication will prevent unnecessary investigation of abnormally elevated plasma cortisol. Wood et al3". http://jama.jamanetwork.com/article.aspx?articleid=348312

Touche mon ami, I stand corrected...